Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Laurie,

Thanks for getting back to me. I agree about the challenges about being good - healthy diet and exercise. The most challenging thing for me is the fatigue. I use to be much more active and it’s exhausting being tired.

I am a breast cancer survivor so I already am working hard at being healthy. I do admit last night I had some sweet potato chips - yummy!

Thanks for the bone marrow info. Clearly something I am not looking forward too.

Yes, continuing to connect would be nice.

It’s getting cold in Minnesota. Enjoy the day. Renee

Hello Renee! I love your question and even though I have not found a great deal of research due to the rarity of SMZL, I have discovered that regular exercise and a whole diet have helped. I am also a diabetic, for which I have my A1c tested every nine months. A1c is an average blood glucose reading over a three month span. Those 3 months prior to each test, I am fastidious about my exercise and diet. This last time, my SMZL bloodwork was at the same time. My results for each appointment showed excellent numbers. I do not think it's a coincidence.

That being said - I don't think there is magic to being proactive - but it is challenging to always be "good."

Good luck with the bone marrow biopsy. I had an excellent team (there were 4 or 5 people in the room) with one person at my head whose job was to keep me comfortable. You'll walk out of the procedure but there is discomfort - just wanted you to be prepared.

I would really love to continue talking with you - since SMZL is usually a "wait and watch" condition - it can be frustrating to do just thatt and I rarely find people who want to talk about it!
Laurie

Laurie,

I am wondering if you have found information about how to be proactive with SMZL? I am 58 and recently diagnosed. Waiting for bone marrow biopsy. Thanks. Renee

cdwilm27, Hello, Is nice to see your labs are showing improvement and hope they continue. I think you have finished your infusions and wondering if they will monitor your progress or if other treatments are being considered. ?
The spot in my lung is small, 7 mm, but PET showed activity. I have follow up appointments to determine what is the best course of action. Will look around Mayo connect to see there are other threads that I can also join.
PET did not show any SMZL related issues, other than a spleen measurement increase of 1 cm over the past year.

Stan, I do get weekly labs drawn. My H&H went from 10.4 and 32.8 on 10/20 to 11.3 and 35.2 on 10/27. My lowest labs were week 1 when I was 9.9 and 32 on 10/4.

Stan, I will be praying that the spot on your lungs is benign.

cdwilm27, Yes, I think I received all the messages. I thought I acknowledged this yesterday, but must not have hit reply because I don't see it posted. Thanks and please stay in touch.

Yesterday's Rituximab infusion went well. The nurse was able to increase the rate of drops per minute as my body has now accepted this med and no longer causes the reaction I had when first infused. I was out in 2.5 hours. I did have the fatigue that I normally experience after my infusion. Today I feel good. Next Thursday is supposed to be my last infusion. I will meet with the doctor before and discuss my treatment plan. Happy Halloween Friday!

yes, you must have sent it early this morning. Thanks

So Stan did see my reply from today?